Never Again! Ketamine, and hospital bullying

This post may contain triggers for some. It talks about bullying, hospitals, trauma. Please take care of yourself first.

This Ketamine treatment was nothing like the first one.

I will never go though this again….NEVER.

I don’t remember anything real from the time they started the infusion until shortly before we left. I hallucinated the entire time, or maybe just lost time…who knows. Yet S tells me that I seemed lucid at\times. I knew there was a chance I could have hallucinations, and dissociate…but this was beyond what I ever expected.

I’m told I was having incredible abdominal pain…this happened last time, but only on the last day, but it was shrugged off as GERD. I received Mylanta and was discharged. I ended up in the ER two days later with severe pain and diarrhea that had been happening since I got home from the hospital. I was given a CT scan and test were taken, I was told I didn’t get any of the bad bugs (like Cdiff) in the hospital but they thought I did get something there. So I was put on a liquid diet for 2 days, followed by a bland diet for another two days, I was also given Dilaudin (a synthetic opioid derived from morphine) in the ER. All of those things relieved it.

This time I had severe pain during my treatment, again waking up screaming, and vomiting this time….I remember none of this. I was given meds, I don’t know what, but it didn’t help much. Again they wanted to discharge me (more about this later). I ended up back in the ER the day after I got home. First I was given Morphine, but it made me itch so much, it’s really hard to deal with intense pain and itching at the same time. I was also given two other medications, dilaudin, and haladol. The pain was so very intense. They actually thought I had constipation with the diarrhea. What? Who’s heard of such a thing? She said it showed on the CT scan, it also showed some “irritation and inflammation”. There is some condition called called paradoxical diarrhea or overflow diarrhea. It happens when watery stool leaks out around hard stool in the rectum. Have you ever heard of such a thing? I sure hadn’t. I don’t understand that, I was having regular BMs before the diarrhea. She wanted to admit me to give me a laxative to see if it helped. I was not willing to do it. I could do laxities at home. She also suggested a bland diet. I also took a stool softener, and magnesium oxide, and have had normal BMs since. I still don’t believe I had paradoxicol diarrhea. At least that part of me is fine. I am still having some stomach pain, but nothing like I was having. I’ll discuss it with my new PCP on the 16th. I’m so grateful I was accepted by this PCP, she used to be a headache specialist at Jefferson (a very prestigious headache clinic) so she is better suited to work with my doctor at the clinic in Phoenix, so I may not have to go there to get some treatments. This office came very highly recommended to me, by another doctor of mine. I hope they really are as good as they say.

More bad stuff

Okay so that was part of the horror of the ketamine. Although some of the visions were interesting. I had to have a catheter many times. They said (according to S) they don’t like to leave it in because you are more likely to get an infection. But the visions that came with it…it’s hard to explain. One of them I saw women surrounding me in ceremonial garments. I was the center of some ceremony. It was strange, but it didn’t scare me, I felt like I was in a place of honor. Other times I did not have good visions. I I wasn’t sure what was going on, I felt violated. I still do. I had no say in what was happening, how can you not feel violated when people are sticking things up your urethra when you are out of it?

There was also a time that I thought there were two Stuarts. One was on one side of the bed, the other was on the other side. It was so strange. I told him I had to smell him to make sure he was the right Stuart. I got very agitated by the second Stuart, he didn’t smell right and was very jealous of the real S, but I had the right one there so I wasn’t scared. S told me I talked about gnomes a lot, that’s interesting, but I don’t remember it.

I’m told when I was hurting so badly I called out for my mother. She died 29 years ago. I still miss her so much. I do always wish she was here to help me through this, help us through this. I’m just so very grateful I have Stuart, and I have such good memories of my mother. I was thinking how hard my life has been, so very hard. How could I be so unlucky? Then I realized I’m one of the most lucky people in the world! I have an amazing husband to help me through this. How could I be unlucky?

I’m getting way off track, as usual, at least that was a good thing….. so let’s get back to this traumatic hospital experience.

First Discharge attempt:

The day after the ketamine was stopped I was set to go home. We were all packed and ready. I was getting in the wheelchair and then said, I don’t think I should leave with so much abdominal pain. The nurse from hell tried to force the issue, then I had a seizure. Other nurses and a doctor came in and said I wasn’t going anywhere. I don’t remember any of this. None of it. How could I have felt like I was ready to go home, with the only symptom abdominal pain, and not remember any of it? After the seizure S told them that the seizures happen when I’m under an extreme amount of stress. It hurts me that I’m having psychogenic seizures again.

Being forced to leave:

The next day they gave me Dilaudin to help with the pain. They finally listened to Stuart. Shortly after the nurse came in with my discharge papers. Stuart said he wanted for us to stay for another 30 minutes to make sure I didn’t have a reaction to the medication. We thought that was all there was to it. I was eating my lunch when suddenly the nurse from hell and an entourage of other nurses and a HUGE security guard came in to escort us out. They had “patient belongings” bags and were ready to throw my things in and forcefully make me leave. I was very concerned and agitated. I kept saying I didn’t understand, why couldn’t I finish my lunch? Why was this happening. No one would answer me, so I got a little loud, I didn’t scream or anything, I just wanted attention since I can’t hear I thought maybe I was missing something. S was busy getting our things in the suitcase so he couldn’t be that help, I doubt they would have said much for him to translate anyway. When I raised my voice the security guard came over to my bed and loomed over me, I shouted to him “I’m deaf and do not understand” it was obvious he didn’t believe me. The nurse from hell tried to touch me to get me in the wheelchair, I did forcefully tell her “Do not touch me”. I got in the chair myself. I did keep saying that I didn’t understand. While we were waiting for the car….yes they all waited to make sure we left….I turned to that nurse, she was the closest person to me…and said I wanted to see who was in charge. She said she was….she was the charge nurse, but she was far from who would be in charge. I told her I wanted to know in writing why I was being treated that way. She said, “it’s been noted”. I asked for her name and she wouldn’t give it to me. I also felt like they put people between me and Stuart so we couldn’t bond together. They rushed me out so fast I didn’t have my mask, and the charge nurse evidently didn’t have hers on since I could read her lips. I am sure that the whole process lasted more than 30 minutes, if you include the time before they came in. Why did this happen? Bullies, that’s all they are….Bullies.

I will NEVER be treated like that again! I will refuse to leave until I at least get the people’s names. We made a formal complaint, I’m sure nothing will come of it, but they can’t find out what the security guard’s name is. I don’t want anything like this to happen to anyone else.

Another strange thing, I was told that a doctor came by that morning and I told her I was ready to go home. She’s the one who ordered the Dilaudin, they finally listened to Stuart, then said I could leave. She’s my headache doctor’s partner, so I do trust her. But I don’t remember any of that. I really don’t remember anything until I was eating lunch. It’s like my brain shut down because of the pain….or the ketamine really hit me hard….I don’t know. Stuart is concerned that I don’t remember the last two days after I was off ketamine and was ready to leave. I do remember every bit of those people forcing us to leave. They didn’t even ask, they didn’t come in and say that they couldn’t allow me to stay any longer….for whatever reason…they just came in and started to pack up my stuff and forced me out.

I’m now having nightmares. It’s hard for me when I go to bed, even when I’m not sleeping, I can feel that security guard looming over me. I can feel the hate in his and the nurse from hell’s eyes This is one of the most traumatic things that have ever happened to me. I’m very afraid the seizures will become a regular occurrence again.

I’m trying so very hard to not think about the past, I know it’s over and I’m safe….but ,my body doesn’t seem to know it, it is fighting hard. I’ve lost all hope. I keep telling myself that’s not true, but it is. I was certain this treatment would help. And it did the first time, until I fell. I was outside in the sun without my hat! I had so much relief. I did feel like it was helping my migraines at first, but the trauma those people caused, I believe that negated every good that the ketamine did. Now what? The only other thing I know of is lidocaine infusions, but I don’t know if I can go back in that hospital. I’m also jumping the gun, who knows what else my doctor has up her sleeve.

I’m trying so hard to be mindful. S keeps trying to get me to stop and really breathe. That has always helped before, and it really helps him. But right now, it isn’t very helpful.

More Horror:

The night after the ER visit I started having akathesia, this happened last time too, so I was prepared with medications from my psychiatrist here. she helped before. But it didn’t work. I was pacing so much! I was anxious. I couldn’t be quiet. The only relief I seemed to get was in the bathtub. I took 7 baths in less than 18 hours. Crazy huh? My psychiatrist increased the dosage on the meds and I finally started getting back to normal. I was to take them for 3 days, when I tried to stop them, the akathisia and extreme agitation started again. So I’ve been on a lower dose since then. I sure did sleep well on those meds, too bad I don’t sleep like that all the time.

I think that’s all….I hope that’s all.

I do have another major stressor going on right now, but it’s worrying about someone else, not anything about me. Nothing I have any control over. Is there anything I have control over? Not my life, that’s for sure.

From Hospital to Akathisia

Another day, another migraine day. It’s the way it’s been for over 6 months now, and it’s been getting worse. How does 6 months of migraine get worse? The severity has been worse….much worse.

The new way to log your migraines now is with the “traffic light” system. With a GREEN migraine, yes you have pain and symptoms but you can still do what you need to do. YELLOW means you have limitations as to what you can do. RED means it stops you. You can’t do anything else buy exist with it.

I saw my migraine doctor virtually on Friday, Yes the same doctor who said she can’t do anything else for me and wants me to go to San Diego for treatment, she didn’t mention this during this last appointment. She saw how many RED days (17 in October) I’ve had this past few months and asked if I thought she should admit me for treatment. I reluctantly agreed. I really wish I hadn’t.

I had my Allay Lamp so I didn’t have to have the bright light from the hospital. It helps relieve migraine pain, and it puts out light that I can stand during a migraine. Unfortunately the nurses didn’t seen to understand about the light. Bright lights are not necessary for everything.

I arrived at the hospital just as shifts were changing. It was confusing and very overwhelming. The pain was high and because of COVID-19 everyone has to wear a mask which means I can’t see their face to read lips, it was horrible I was so glad that Stuart was able to stay longer than they said he would be able to. He answered questions for me, which is really hard on me. I’m the patient. I’m the one who needs to know things, but I couldn’t hear well enough to understand what was going on a lot of the time.

The migraine doctor gave orders for me to get DHE shots, only. She didn’t prescribe anything else. I could do that at home! I expected a

DHE (Dihyrdoergotamine) is given with an antiemetic, so you won’t get nauseous. They gave me compazine instead of promethazine (what I normally take). Compazine isn’t just an antiemetic it’s also an antipsychotic. Antipsychotics can cause akathisia. (a state of agitation, distress, and restlessness, you feel like you have to move ALL THE TIME) You may remember a few years ago when I took Latuda I had a terrible time with akathisia. Now if I take any antipsychotic I get akathisia. I am having a helluva time. I cannot be still. On top of it all, I’m having PTSD because of my past experience with this. I can’t do this much longer. I don’t know what to do.

We called my migraine doctor on Monday morning. Stuart talked to the triage nurse and she said she’d send the message to the doctor “Top Priority”. My doctor didn’t call back until today, it’s Wednesday. So I’ve had akathisia since Saturday!! We called my PCP after hours yesterday and Stuart talked with the doctor on call, he called in something that is supposed to help. I’ve had two doses so far and I’m still moving. I

t’s hard to sit still and write this. I’ve started it over many times over the last few days. I have a horrible migraine right now, I can’t walk around with this pounding in my head. I feel like I’m being tortured. I NEED to MOVE, but I can’t because the pain gets worse and I’m dizzy. Stuart is calling my psychiatrist to see what she suggest since she is more used to this class of drugs. I think the drug the doctor put me on last night might be working a little, but with this SEVERE migraine pain I can’t move as much I as NEED to because it makes the pain so much worse. It really is torture.

Cross fingers for me that this medication works. I can’t write any more. I’ll be back after I feel better. xoxo w

I Didn’t Expect

expectationI didn’t expect the depression I’m feeling….

I saw the signs, I have so much going on, there are so many outside reasons….but I’m struggling….this is why I’ve been away so long, why my blog has been suffering, why I simply haven’t.

Today, I’m going to write, I have too much to write about, I am overwhelmed by how much I have to write about, but I need to…..

I didn’t expect to have vertigo almost all day the day before surgery.

I didn’t expect to have vertigo in the waiting room right before surgery.

adapted from Teen Titans cartoon
adapted from Teen Titans cartoon

I didn’t expect the intense pain after my surgery.  During surgery the back injury that just got better was aggravated.  I was not just dealing with surgery pain, the pain I expected, I was dealing with the back pain and severe sciatic pain.  To make it worse, I couldn’t move to make the back and sciatic any better.  I was stuck, in so much pain.  We could not get this pain under control.  I have issues with pain medication.  Everything makes me hypersensitive, I feel like things are on me, it makes me itchy.  So I was only prescribed Tylenol and Tramadol.  This didn’t do it.  They tried to put me on my side to help, this caused me so much pain I swear I wasn’t even in the room it was just pain.  Luckily, it didn’t last long.  I decided I’d rather itch.  They tried Hydrocodone.  nothing.  I don’t know what all was tried.  at 2am they tried Toradol, this is a NSAID given by IV or injection.  I’ve had it for my migraines before.  This finally worked.  Probably in conjunction with everything else.  I finally fell asleep.  Only to be awoken at 4am to have my blood drawn.  Then at 6am for something and at 7am because shifts changed….it was an exhausting.  But I have to say, the night nurse who was trying to help me was absolutely wonderful, I couldn’t have asked for better care.

I didn’t expect to have low blood pressure, a magnesium deficiency, and have to stay another night.

I did get out of bed the first day and walk a little, I was told I did great.  (the intense pain hadn’t started yet)  I had my morning Physical Therapy on the second day and did well, even though I was a little dizzy.  I didn’t expect to have a vertigo that afternoon.  During my vertigo attack I had 3 different people come to work with me, including my Physical Therapist.  No afternoon PT, no going home.  They also had to make sure my pain was under control before I went home.  It was better that night…but I had to sleep in a recliner, glad we bought one for me the right before I had my surgery.  (ugly thing)  I didn’t expect to HAVE to sleep in a chair for many nights after I got home.  I didn’t expect to cry from the pain so much, after my surgery.

I didn’t expect my sister to come and help.  I am very grateful.  I didn’t expect it to be so hard for Stuart to stand back and allow someone to help.  He said he’s just used to doing it, it’s hard to ask someone else to do things.  Yep, I know that feeling.  It’s very hard to ask others to do things.  Especially, for me to ask for the little things.  It’s hard to ask for things like something to drink, or a snack, to reach something for me, to get me a blanket if I’m cold….ect.  Yep, I’m having a hard time asking for things too.  I’ll ask for someone to go to the store, or do some laundry, things like that…..but it’s the little things that get me.  It makes me feel so helpless.  Eh…I guess I am.   (I feel pretty weird having anyone other than Stuart do private things for me too…that is one of the hardest things I’ve had to deal with…one of the hardest)

I didn’t expect to have vertigo every day since my surgery.

I didn’t expect for Stuart to have to take off a second week from work.  (I think he got in a little bit of work the second week…but not much.)

-Rachel Wolchin thegoodvibe.co

I didn’t expect…..

I didn’t expect to have a death in the family two days after my surgery.  It was my extended family by marriage (my cousin’s daughter’s husband), I didn’t know him personally, but the circumstances of his death were hard….so very sad.  He was young, in his late thirties.  He was EMT on his way to work and pulled off and parked at a gas station, they found him slumped across the steering wheel dead.  The autopsy has been inconclusive.  There are still test out, but they don’t expect to find anything.  They will probably have no idea why he died.   They also found out a lot about him that his wife had no idea about, it is very, very sad.  It also makes you think…..and think….

I didn’t expect for one of my father’s friends to die the next day.  I knew him growing up.  He worked with my father, they used to Barbeque (or barbecue in some parts) together.  When I say Barbeque, I mean Southern Barbeque; a huge hog in a pit, slow roasted all night long….oh my it is good.  We used to have picnics and things over at his farm.  He let me touch my first cow, it was much softer than I thought it would be.  He was 12 years younger than my father.  As you get older you see more and more friends die, I wonder if my father is having a hard time with this?  I’ve noticed he goes to a lot of funerals.  That’s a subject that would be hard for me to broach with him.

I didn’t expect my friend Laurie from Hibernationnow’s Blog to die on April, 21st.  She caught the flu in February and that just snowballed into more and more, she just got sicker and finally her body couldn’t take it any more and she died.   I’m in complete in shock about her death.  I keep looking for updates to her blog in my email.  I look for her to chat with me on Facebook.  I heard from her in some way nearly every day.  It may not have been personally, but I always knew she was there.  Now she’s not.  Just like that….suddenly her voice is gone.  Her thoughts are not in my life any more.  Laurie fought fibromyalgia, she was quirky in ways and loved the color yellow, she loved the ocean, writing, and most of all her family.  We were both foodies, and we both lost a dogs who left huge holes in our hearts, and later we both adopted rescue dogs who took over a new place in our hearts.  The one thing we disagreed the most about was our feelings about the chef Alton Brown.  She hated him, I love him…..it was quite a debate on one of her post!  I will miss you Laurie.  All the support and love you gave me, and our friendly banter.  May you be pain-free in a nice warm place near the ocean taking a walk with your father.

I didn’t expect my dearest friend’s mother to die this week.  She has been battling Amyotrophy Lateral Sclerosis (ALS, otherwise known as Lou Gehrig’s disease) for the past 9 months.  I’m actually relieved she didn’t have to live in her body with her mind fully aware without being able to communicate with anyone for very long.  I loved Kathy very much.  I wanted so much to be there to help care for her.  I wanted to be there for my friend and help her through this difficult time.  Now I can’t be there for her again.  The death of her mother is going to devastate my friend.  She was closer to her than anyone.  They talked daily.  They were best friends.  Her mother’s illness took a toll on the family.  Yes, she will have a lot of people around her, but I know she needs her best friend.  It is extremely hard not to be able to go.  I am so tired of feeling useless.  But this should not be about me, it should be about Kathy.  She was such a strong woman.  A single mother, raising 3 children mostly by herself.  She was so generous and kind.  She worked so hard and hard and hard….and she gave and gave and gave.  This probably gave her more joy, but from my view I wish she had been able to take more time for her.  She was just about to retire when she got sick.  I know Kathy did have a good life, and celebrated life, but I also know she was looking forward to slowing down and just enjoying her grand children.  Please don’t put off living until tomorrow.  Kathy was one of the best people I knew.  That sums it up pretty well.

I didn’t expect writing this post would make me feel better.

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